Why is it so hard to love somebody with Asperger's Syndrome?

Check out this video made by summer intern and rising Cheltenham High School junior, Dylan Welch, after reading Dr. Ariel's book, "Loving Someone with Asperger's Syndrome."  Any feedback for Dylan?

Revisiting Masculinity:  The father’s journey with autism
by Robert Naseef, Ph.D.

When my son was born in November 1979, I jumped for joy.  When he was diagnosed with autism 4 years later, I thought my head was going to explode.  I couldn’t get the word autism out of my mouth for months.

In general, it is harder for men to talk about problems than women. Women seem able to talk about problems and find comfort without needing to fix them. Of course, women do want to fix problems. As for men, when we can't fix something, we don't want to talk about it—and this is a factor in male depression and a problem in relationships. 

As Nelson Mandela wrote, “A boy may cry; a man conceals his pain.”   Boys are still taught at a young age to feel ashamed of their tender feelings, especially their gentleness, caring, vulnerability, and fear.  What is acceptable is showing their tough, action-oriented side along with physical strength.  All emotions save anger are to be hidden even from themselves. So what’s a man to do when his child is diagnosed?   How do you handle that choked up feeling?  Men tend to withdraw and cry on the inside.  On the outside we may be grumpy and irritable, but on the inside we are hurting. This is part of the secret life of men raising a child with autism.

I wanted to be a better version of my father when I held my son Tariq for the first time.  I looked at my son and saw myself, only better.  His diagnosis of classic autism shattered that reflected vision, like a broken mirror.  There were no words. 

  Asking a male how he feels usually evokes an automatic “I don’t know.” What helps men express themselves when experiencing a broken mirror with an autistic child, 80% of whom are boys?  Try “Guy talk” such as:

•           What’s it like for you? (Curiosity works better than empathy)

•           Tell me more.

•           I need to know to be closer to you as your / wife/ friend/ brother, etc. 

•           Your child needs you.

•           Let’s figure out a plan.

Men respond to making an action plan.  This is a positive part of the male code and not outmoded.  Our families need us to be present, and as fathers we are yearning for connection but lost about where to start with a child who is so different.

To find clues, I ask men about their warmest memories of their fathers.  Almost without exception they recount doing things with their dads such as taking a ride or a walk, building or fixing stuff, going on errands, cleaning up the yard, watching TV, or throwing a ball around. 

The essence of every good memory tends to be doing things together.  This fits the male mode of being.  It’s not everything.  But it’s a good start and it works every day.  We still need to get up to speed listening better and expressing ourselves.  We’re a work in progress.

I yelled!  Am I a bad parent?  
by Robert Naseef, Ph.D.

Parents frequently confide to me when they have lost their patience. Fathers as well as mothers share their guilt and their heartbreak when this occurs. As one mother said to me recently, "My mother yelled at us, and I vowed to never yell at my children. Now I'm becoming a yeller. What's wrong?"

Just last week a father told me about how he lost it with his four-year-old son with Asperger's. After picking up his son from school, he stopped at the convenience store for his wife to pick up milk for the next day's breakfast.  His son did not want to stop and had a full-scale meltdown. When he didn’t calm down, his father started yelling at him. Now just a few days later, his father was wracked with guilt.

This father like other parents felt guilty. I assured him that his reaction was not unusual and did not indicate that he was a bad parent just because he lost his patience. He told me that his son had made tremendous progress since being diagnosed over a year ago, and he just couldn't understand this.

I briefly discussed with him that difficulty regulating emotions was more often than not one of the challenges that goes along with being diagnosed on the autism spectrum. Changes in routine, such as stopping at the store, can often be a trigger. This occurs all along the spectrum from mild to moderate to severe.

By the end of our counseling session together, this father looked at me and came to his own conclusion. "I have been expecting too much. That's the lesson I'm learning. I have to do better at managing my expectations; that's the only way I can remain patient during situations like this."

Of course this sounds simple, but in the moment it is easier said than done. In order to manage expectations, it is important to understand the individual developmental profile of your child. The best way to understand this is to learn everything possible about your child's diagnosis and communicate regularly with your child's teachers and therapists.

In terms of your expectations about yourself, let's be clear: it is normal to struggle with your patience in challenging situations.  So the next time your child has a meltdown, take a breath—or two or three. Then ask yourself what you're expecting and how reasonable that is in the moment you are presently in with your child.

Moment by moment, day by day, being mindful of these issues, you and your child will both grow.

Mothers Day Hints for Men 

by Robert Naseef, Ph.D.

Why is it so hard for moms to take a break? What can fathers do to help?

First of all, struggling with taking a break from maternal responsibilities is normal. This is hard for the mothers of typical children—who presumably have a little less to be preoccupied about than mothers of children who have autism and other special needs.

So feeling overwhelmed by the enormous responsibilities of motherhood is normal, but when it goes on indefinitely, it’s not healthy for a mother or her family. And fathers tend to begin feeling left out and neglected. While I frequently write about fathers, I spend a good deal of my time as a psychologist listening to mothers. Almost invariably mothers seem to be relieved when they give voice to their struggles—particularly the guilt about not doing enough or missing something they should have done or thought about.

Opening up and connecting about upsetting situations can help. On the other hand, suggesting that a mother do more to take care of herself often makes her feel worse. Listening to mothers in at Alternative Choices, we hear that this can sound like just one more thing to do. Their lists are already too long. And another thing they just aren’t getting right—even more guilt!

One mom even told me, “My life seems like one long day!”
In contrast, the average overwhelmed father seems to have less difficulty taking a break. On the other hand, he may also have trouble talking about what he cannot fix or take action about. He may shut down out of helplessness and emotional overload that he has no words for. The very same man may love his partner and children passionately; yet he may feel left out, ignored, and powerless.

This reaction offers no outlet for his partner’s feelings.
Still, most fathers admire when the mother of their children reacts like a mother lion with her cub, doing everything possible to raise their child.

So for this Mothers and Day and every day really, here’s a plan for men:
• Tell your partner how much you appreciate her and everything she does for your children. Be specific about all the wonderful things she does and how hard she tries.
• Don’t do something. Don’t make suggestions. Volunteer to just listen to how she feels.
• Ask what you can do to make her job easier.
• Gently and persistently keep asking and showing up to do stuff.

This is how to be a good man in your situation. Help her to take a breath, literally and figuratively. Let her know that she is indispensable. No one can do a better job. In the words of Oliver Wendell Holmes, “The real religion of the world comes from women much more than from men—from mothers most of all, who carry the key of our souls in their bosoms.”

Finally, remember the most important thing a father can do for his children is to love their mother.

Helping Fathers Bond with Children with Autism
by Robert Naseef, Ph.D.

With men, there is often an awkward pause before they can find the words to speak.  Not about sports—that’s usually easy—but about what it is like to be doing their best to face autism with no “fix,” no exit, just life-altering challenges.  Then they share their struggles and what they are learning about how to relate to their children and families. This is some of the work I do as a psychologist who happens to also be the father of an adult child with autism.

As Nelson Mandela observed, “A boy may cry; a man conceals his pain.”  There is a traditional male imperative to “suck it up,” so men tend to cry on the inside.  On the outside we may be grumpy and irritable, but on the inside we are hurting.  Life doesn’t stand still and wait for us.  Families need fathers to express themselves, and to spend time teaching, playing, and otherwise engaged. Children with autism hunger for their fathers’ involvement and approval just like every other child.

In opening up, possibilities emerge for fathers about ways to connect with their children who relate and experience the world differently because of autism.  For example:  
• Their children may be drawn to Lego’s or video games as opposed to sports, and they want us to be there with them.
• They may struggle with language to express themselves, so we have to learn to read their nonverbal clues.
• Sensory differences and difficulty regulating emotion may trigger shutdowns and meltdowns so we have to learn to be sensitive to these issues.

Children with autism are also just children; growing up is about more than just the necessary therapies.  So find something parent and child can do together and enjoy.  It could be as simple as taking a walk or a ride in the car.  Or get on the floor and play with cars or blocks in whatever way your child likes for starters.

By entering the autistic world of our children and understanding how their minds work, as opposed to trying to make them who we want them to be, we learn how to be with them.  Only then can we grow together.  Fathers involved in the daily lives of children inspire with their love and devotion.   

Life with Aspergers: Book Review: “Loving Someone with Asperger’s Syndr...

Life with Aspergers: Book Review: “Loving Someone with Asperger’s Syndr...: Over the years, I’ve read quite a few relationship books, some have been good, some were bad and some were truly great. Most of these book...

Learning to listen to "I Don't Need Help!" by Kelly Peters, MA

It can be hard, if not impossible for some people to see something that (they think) needs to be fixed and do nothing.  It's maddening.  Twice last week, when working with adolescents I saw the need to help, to fix what I saw to be a problem, and twice last week I was shut down.  I've thought about it and realized that as a caregiver it can be difficult to refrain from rushing in to help.  Whether it is a person with an addiction, an aging parent, or a young person dealing with the frustrations of a world that doesn't always understand them, the impulse to fix, to help, is overwhelming.  What we miss in our rush to fix, however, is the opportunity to listen. The chance to simply be present and aware for someone.  To allow them to talk, as much or as little as they are ready to about what is going on.  To simply BE for someone without extensive probing, without questioning them, without solving things. Sometimes it is the process of the problem; sitting with the issue, allowing it to develop on its own that is the learning, that is, truly, the fixing.  So I will be working on my new mantra this week "shut up and listen". Wish me luck. Kelly Peters, MA

Coming In March

DSM  5: A view from the trenches   by  Robert Naseef, Ph.D.  

A New York Times article on January 19 entitled “New Definition of Autism May Exclude Many” has started a panic in the autism community about the changes in the definition of autism scheduled for release in the DSM 5.  Are our children in danger of losing services?   Can we hurry science? Is anything really changing? These questions and more are perplexing the autism community and professionals as well.  I write from the perspective of a practicing psychologist and as the parent of an adult child with autism.

            Let's not lose sight of the bigger picture. The struggle to get and keep good services for a child diagnosed with autism has been the story of my life with my son for over 30 years. Anyone who cannot afford to pay for the services themselves has faced and continues to face the same uphill battle. I doubt that this will change in either direction with the new criteria.

Debates between experts are not new in autism but can be disturbing to families who are caught in the middle and don’t know what to believe. The firestorm we are witnessing is based upon an unpublished study founded upon questionable data that has not been reviewed by other scientists.  Psychiatrist Fred Volkmar from the Child Study Center at the Yale School of Medicine stepped down from the DSM committee, presented this data to the Icelandic Medical Association and then participated in the NY Times article.  It looks like Dr. Volkmar decided to take his issues with the DSM 5 autism criteria to the court of public opinion.

Based on this study, the New York Times reported that “about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.”  No wonder that people are scared.  Access to services for all affected by the symptoms of autism is vital and any threat to this is terrifying. But we don’t really have evidence that this is what will happen with the DSM changes.   DSM 5 field trials are underway, and Autism Speaks and the Autism Society advocate for an in-depth assessment of the impact of the DSM 5 changes upon those currently receiving services.  

Every time I think I have my mind wrapped around the controversy, I read something else and become re-confused—at least temporarily.  Many colleagues who are mental health professionals are having the same reaction to DSM 5 changes in general, not just the autism criteria.  Change that can impact your family can be difficult, let alone when researchers and well known doctors are arguing on public forums.  If well-read professionals feel confused and concerned how are parents and others supposed to feel?  

In reviewing the children and adults diagnosed with autism in our psychology practice over the past 20 years, I have not come across anyone who would lose the autism diagnosis.  On the contrary, we have served many families whose children were misdiagnosed and undiagnosed several times before finally being correctly diagnosed with autism.  In recent years, because of the increased awareness of the symptoms of autism, we have also ruled out autism when it was suspected and not confirmed upon careful evaluation.

We have also observed for several years, that the autism diagnosis by itself does not lead to the level of services experts recommend. A two year old child just diagnosed with autism, for example, in most parts of the United States gets only a few hours of home based services per week, while experts recommend 25 hours of programming per week. Despite the increasing ability to diagnose autism spectrum disorders accurately in very young children, the actual practice lags behind.  Parents and professionals know all too well that the lack of or removal of services has been an ongoing threat.  Parents have had to argue the challenges faced by their child and their symptoms in order to get what their child needs regardless of the autism label. Many schools are poorly funded, especially in the inner cities and rural areas.  Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.  Even in relatively better funded school districts, services are often cut back especially when children make progress.

From my perspective, it is preposterous to say that over-diagnosis of autism is a major problem.  That position is in denial of the everyday life of families who love and care for children with the symptoms of autism.  Scientifically, we do not know how many currently diagnosed children and adults will no longer meet the new criteria.  The issue hinges upon how professionals will interpret the new definition.  That problem is nothing new.  DSM 4 and DSM 3 had the same problem. 

There is no doubt that there will be change.  In closely reviewing the new criteria, I think that DSM 5 brings clarity in describing what we have been calling the autism spectrum by officially recognizing the wide range or continuum of how autism impacts an individual.  There are other related issues which I am not addressing in this commentary.  For example, eliminating Asperger’s syndrome as a category is a serious problem for those who have lived and created a sense of community and identity with this label.  Whether the DSM 5 changes related to autism will be for the better or for the worse depends upon how families, people with autism, and professionals handle them.

Loving Someone with Asperger's Syndrome

My self-help book for partners of people with Asperger's syndrome has just been printed and is being sent to me as I write this.  It will be available in bookstores soon!  Alternatively, you can come to the book launch event that we are holding at our Alternative Choices office at 319 Vine Street, # 110 in Olde City Philadelphia, PA (19106) on Friday March 16 from 5:30-8pm.  It is a book that hopefully will help those of you in intimate relationships with someone who has AS to navigate a loving relationship with your partner.  I just found out today (not sure why it was a secret) that the publisher received at least 5 very favorable reviews from people who read the initial manuscript including Dan Gottlieb and Tony Attwood.  I am very much looking forward to your feedback about the book and about your experiences loving someone with Asperger's syndrome.  Cindy Ariel

Why are there so many songs about rainbows and what's on the other side? (by Cindy N. Ariel, Ph.D)

Because somebody thought of it, and someone believed it. That's what Kermit the Frog sings, anyway. And this is stuck in my head today for a number of reasons. The biggest is my concern about the so-called 'Cassandra Syndrome.' It sounds like a real syndrome but really isn't based in any serious peer reviewed research and isn't a real clinical syndrome listed in any of the usual manuals for professionally diagnosing syndromes and difficulties. Yet, I recently had a session with a married father with Asperger's syndrome who told me that he was working with his wife on a workbook for couples when they came upon a description of the Cassandra Syndrome wherein his wife started to tell him that she was a 'Cassandra' - a misunderstood, emotionally deprived and physically suffering victim of an empty emotionless relationship caused by him due to his AS. This accusation being thrown at a man who does indeed struggle to understand his wife and children and to be the best husband and dad he can be although it did take him years to finally get to a point of agreeing he needed to learn how to do these things. The accusation seemed extremely harsh. It was one-sided and unfair based on how much growth and work this guy has put in over the past couple years to overcome some of his relative weaknesses to maintain a loving home with his family. And it keeps repeating in my mind...somebody thought of it, and someone believed it... And that's all it took for this guy's positive couples work with his wife to become a crushing experience for him.

Innocence

I had a poignant conversation with a young woman who just started seeing me for psychotherapy. She had a very difficult childhood. Both parents were critical, judgemental and self-absorbed. They were also both alcoholic and were emotionally unavailable, at best. As a teenager, she moved with her mom into the home of her new stepdad who had a teenage daughter and a son with autism. The girls had to share a room and had little in common. These were described as very dark years. I acknowledged how difficult this would have been: to have no parental support while being forced to move into someone else's bedroom who is not fond of you at all and suddenly having to live with an autistic kid on top of it all. "Oh no," she replied, "he just has some issues but he was never mean to me like all the others; we got along." Talking about her autistic stepbrother brought the first smile I saw to the face of this very sad and troubled young woman.

"I'm So OCD...Part 2" (Liz McGarry)

 I recently posted a blog discussing the use of psychological disorders such as OCD, Bipolar Disorder and ADD, as adjectives in everyday life. During the two weeks since I posted that piece, I have witnessed many examples of this phenomenon in action: OCD was used to describe someone who used a lot of hand sanitizer, ADD was used to describe someone who couldn’t focus in the library, and Bipolar was used to describe the weather. When I heard my friends and classmates use these terms, I made sure to ask them to think about why they chose to use them. This has allowed me to engage in many important conversations about what it really means when you say, “I’m so OCD,” and the implications that using these phrases have on those who actually do suffer from the disorder.

 One of the most meaningful conversations that I have had about this issue actually took place about five minutes ago. I was sitting at the desk in my room, messing around on my laptop and brainstorming what I wanted to write for this post. One of my housemates, Anna, (who happens to have OCD) was lounging on my bed, struggling to get through some Spanish homework. I decided to share the topic of my post with her to see if she had any insight to offer. “Oh I hear people say it all the time,” she said casually. “Of course it bugs me. People need to stop saying that they’re having an OCD moment. Sure, you may like things to be a certain way—everyone feels like that at one time or another. For me, it’s different. I don’t just want things to be a certain way, I need them to be. Unless you have OCD, you can’t possibly understand what that means.”

In the middle of this in-depth exchange, another one of my housemates, Jason, walked into the room and we asked for his thoughts on the subject. Unlike Anna, Jason has not experienced a psychological disorder, nor does he have a background in the field of psychology.  

“Well, I definitely eliminated the word ‘retarded’ from my vocabulary, that’s just not right,” he answered quickly. “It’s different with words like Bipolar though. I mean, when I say the weather is Bipolar that’s way more correct. Like, people who are Bipolar have two extremes, so when it’s rainy and then it’s sunny that actually makes sense.”

 Anna pushed Jason a little further. “Don’t you see how they are similar though?” she asked. “You wouldn’t use the word retarded, because you understand that a person with an intellectual disability is more than just a label. How is Bipolar any different?”

“Yeah,” I chimed in, “People with Bipolar disorder aren’t so black and white. They experience a range of complex thoughts and emotions just like everyone else, and it’s unfair to compare their life experience to something as simple as sun and rain.”

Realizing that Anna and I might be coming on a bit too strong, I stopped myself in the middle of my lecture and gave Jason a chance to respond. “You know it’s something I never really thought too much about,” he explained. “People say OCD and Bipolar all the time. I just never really thought that anyone was offended by it. Now that you mention it, I’m definitely going to try to quit the habit.”

Before kicking my friends out of my room (so that I could actually start writing this piece) I asked Anna one final question. Why don’t you ever speak up? If you hear people saying it and it bothers you, why not ask them to stop? What it basically came down to is this: sometimes these things are hard to talk about. Anna doesn’t want to draw attention to her OCD when she doesn’t have to, and sometimes confronting the problem is more awkward and uncomfortable than just letting it slide by. Although I totally understand where she is coming from, I think it would really make a difference if people had more discussions like the one that took place in my room tonight. I believe the issue is not a matter of hate or discrimination; it results from a lack of education and discussion about the issue. Use of the “r” word improved significantly after people started speaking up and a powerful movement was born. Maybe it’s time for a new movement. 

*I changed the names of my friends for this post.

"I'm so OCD..." (Liz McGarry)

The other day I was hanging out with some friends, reminiscing about old high school teachers, when one of my friends blurted out, “Yeah that class was so retarded!” I didn’t say anything to her about it, but it kept bugging me the rest of the afternoon. I hear the “r” word thrown around a lot. It has unfortunately become a part of our daily vernacular, despite campaigns to end its use as an insult. I can’t help but get a little bit uncomfortable when I hear it thrown around so often.

A few hours after the “r” word incident, I was working on my application to study abroad in the spring. (I’m hopefully going to Ireland to study psychology---I can’t wait!) My sister was helping me edit my personal statement, and I kept rearranging the paragraphs over and over. “Sorry I’m being so OCD about this. I just want it to be perfect,” I commented, without even thinking about it. Then suddenly it struck me. Why was it okay for me to refer to myself as OCD, which I frequently do, but totally unacceptable when my friend referred to that “retarded class”?

 This got me thinking about other times when I hear diagnoses used incorrectly. How often do you hear “she’s so ADD” or “the weather is so bipolar today”? It happens more often than you might think. By using these terms in everyday speech, we are minimizing the severity of the conditions, and contributing to stereotypes that can hurt those who actually do suffer from them. Using the terms as an adjective (i.e. “I’m so OCD” instead of “I have OCD”) implies that these conditions are a personality trait, something that can easily be changed or controlled. I find that such distorted perceptions of these disorders sometimes lead people to incorrectly diagnose each other. I frequently have friends come up to me claiming, “Oh so-and-so definitely has Asperger’s, don’t you think?”

For the next two weeks, I plan to keep a journal of all of the times I hear psychological disorders used incorrectly or offensively. I will include things I hear in television or movies, that my friends and family say, and even when they accidentally pop out of my own mouth. Although I am now making a conscious effort to remove terms like “Bipolar” and “OCD” from my everyday vocab, it is something that has been so ingrained into my language that I know it will be a challenge. I will post a new piece two weeks from today, and share what I have learned. My own little pseudo-experiment! I imagine the results will be interesting…

Social Skills for All! (Kate Altman, M.S.)

Sometimes when I am trying to explain, teach, or role play a social skill or unwritten social rule to a person on the spectrum, I feel stumped.  Social skills and good social behavior can be challenging for all of us!  I consider myself relatively socially-savvy (you would hope so since I've spent a lot of time teaching social skills!), but I have certainly done the wrong thing or put my foot in my mouth on more than one occasion.

Interestingly, I've randomly come across some really nice articles intended for general audience that have great tips for mastering some social rules/etiquette.  This is one from Real Simple magazine about common phrases to avoid in conversation and what to say instead.  For example, they say that you should not tell someone they look tired, but instead should ask them, "Is everything okay?"  And this is a post on a lovely blog called Enjoying the Small Things by the mother of two children, one of whom has Down syndrome.  She breaks down what it means to be a good friend and suggests some ways to be a good friend, such as "really listen" and "remember little details".

Articles like these are helpful, and also a great reminder that we can all benefit from social skills education.

All Aboard! Trains and ASD (Kate Altman, M.S.)

Until I began working with children on the autism spectrum, I did not even know that my city's transit system, Septa, had its own museum.  As child after child told me about this museum through the years, I started to wonder what percentage of its visitors are on the spectrum.  Apparently, a great deal.

According to this New York Times article, children with ASDs' overwhelming interest NYC's New York Transit Museum have prompted the museum staff to create special programs for kids on the spectrum.  Their program, Subway Sleuths for 9- and 10-year-olds, has become so popular that the museum staff have decided to expand it starting in the fall.

Many children with ASD find transportation--particularly trains--fascinating and soothing.  Train, subway and bus schedules and maps are complicated and full of detail, but the trains/subways/buses themselves are (usually) predictable and reassuring.  In my experience, I have found that so many children on the spectrum have a special interest in trains that I often have to explain to people that many individuals with ASD have special interests OTHER than trains.

I think it is wonderful that a community organization like a city transit system is recognizing and embracing its impact on children on the spectrum.  Programs like the NY Transit Museum's excite and inspire kids with ASD, invite them to participate in the community, and build social skills and friendships.

What is your experience? Have you visited a transportation museum (or a museum dedicated to another special interest)?

ASD on TV...and in Books, Comics, Movies, etc. (Kate Altman, M.S.)

In working with children, adolescents, and young adults on the spectrum, I have often integrated representations of ASD in the media throughout the course of therapy.  I quickly found that young clients with ASD often enjoyed and appreciated the exercises.  We used pop culture and the media therapeutically in the following ways:

1.) Education.  When a person who is not a very young child is first diagnosed with an ASD, they may feel confused and overwhelmed by the diagnosis.  What does it mean to have an ASD?  How do people with ASD act?  What might my life be like?  I often direct clients who were recently diagnosed to explore ASD by reading books and poking around on the internet.  I especially like to point them to biographies about individuals on the spectrum, such as Stephen Shore, Temple Grandin, and John Elder Robison, and suggest they look for videos on YouTube made by "real life" people on the spectrum to get a feel for what ASDs are like and generally get the sense that they are not alone.

2.) Self-Esteem. I have asked groups of adolescents to look for books, comics, movies, and TV shows that feature characters who have (or may have) ASD who they think are cool.  They are often excited to discover characters with features like super powers, dry, witty humor, and, courage to whom they can relate and to make the realization that talented writers, directors and illustrators have interest in people on the spectrum.

3.) Self-Advocacy.  Reading about ASD self-advocates like Stephen Shore and Temple Grandin often inspires individuals on the spectrum to think about their own self-advocacy.  The reverse works as well: some of my clients take issue with portrayal of ASD in the media, such as the poorly-written, overly-stereotyped character of Dr. Dixon on NBC's Grey's Anatomy or the Braverman family who have a son with ASD on the NBC show Parenthood.  These portrayals anger some of my clients and help to inspire them to want to correct misrepresentations of ASD in the "neurotypical" community through self-advocacy.

4.) Humor.  Typically, young people on the spectrum spend a lot of time in therapy.  So I think it is important that some of that time actually be fun and enjoyable.  And humor helps build rapport between therapist and client as well as between group members in ASD therapy groups.  Characters like Abed on Community and Sheldon from The Big Bang Theory are clever and hilarious, and it is fun for individuals on the spectrum to see ASD characteristics portrayed in a positive and lighthearted manner.

What are your thoughts about ASD in the media and pop culture?  Do you find it inspiring? Entertaining? Offensive? A combination of all three?

Post-Partum Depression (Kate Altman, M.S.)

As I mentioned in a previous post, I started attending a New Moms Support Group when my daughter was born.  I remember at one of these meetings, one of the mom's, "Cathy," started to tear up as she announced to the group, "The doctor officially diagnosed me with PPD.  I'm going to see a counselor and take medication to see if that helps.  It was so great to have what I've been feeling acknowledged as more than just 'the baby blues' and I'm hoping that treatment will really help." My heart ached for Cathy as the tears rolled down her cheeks and she clutched her beautiful son.  She looked so desperately sad and lonely.

Post-partum depression affects 1 in 7 women, according to this piece that aired on NPR yesterday. PPD is distinguished from the "baby blues", which are much more common and typically occur within the first few days or weeks of birth (but are also significant and ought to be taken seriously by a mother's support system).  PPD includes serious depression symptoms (severe mood swings, loss of appetite, insomnia, overwhelming fatigue), possibly suicidal thoughts or even attempts, difficulty bonding with the baby, and oftentimes, obsessional thoughts and fears about harming self or the baby.  Rarely, some women can even develop postpartum psychosis along with PPD, which may include hallucinations and/or delusions.

Many women suffering from PPD or even a significant case of the baby blues feel guilt or shame because they think they "should" be nothing but overjoyed with their new child...particularly with a "planned" pregnancy and healthy baby.  This guilt or shame can prohibit women from seeking support and treatment.  However, treatment--including counseling from a therapist specializing in postpartum issues (such as Alternative Choices, actually), joining a support or therapy group, and possibly medication--is crucial to both the health of the mother and the baby.  In general, I can't stress to parents enough the importance of self care in order to take good care of our children.

As Cathy spoke to the group that day about her struggles with PPD and her search for treatment, I remember feeling not only a sense of compassion for her, but also pride.  I felt proud of this mother who was brave enough to not only seek treatment, but also to openly share her story with other mothers. Now--after several months of treatment--she is much happier and her son is flourishing.

The Window (Liz McGarry)

Ever since I became interested in a career involving autism I imagined myself working with very young children. I know that early intervention is one of the best ways to promote healthy development in children with autism, so working with one and two-year-olds always seemed like my only option. Or so I thought…

Everything changed last semester. I will never forget the first day of my internship at the Manville School in Boston, MA. I sat in the back of the class of middle-schoolers with autism, quietly observing and taking it all in. Three teachers circled the room, helping their small group of eight boys to remain quiet and focused. I noticed one boy, Alan,* was having the most difficulty paying attention. A teacher handed him tickets when he sat quietly in his desk, and took them away when he started laughing loudly or interrupting the class with his favorite lines from SpongeBob. (I later learned that enough tickets earned Alan a coveted prize—an old set of car keys.)

During health class, the head teacher was leading a lesson about the brain. She asked the class, “What part of our body helps us to think?” It was hard for me to tell if the boys didn’t know the answer or simply weren’t paying attention, but they all stared back at her blankly. After a brief pause, all eyes were on Alan as his hand shot straight into the air. “Yes, Alan?” the teacher asked. “Brain cells,” he replied flatly, “Brain cells help us to think.”

Out of nowhere, a chorus of shouts and cheers echoed throughout the room. The noise came so suddenly I nearly jumped out of my seat. All three teachers jumped up and down, wildly dancing around the room shouting, “Alan! You did it! We’re so proud of you. Great job!” Alan’s expression shifted from bored indifference to a wide grin as he realized the sudden celebration was in his honor. At fifteen years old, this was the first time Alan ever raised his hand to answer a question.

After that first day at Manville, watching three teachers help Alan celebrate such a significant accomplishment, I knew that my original ideas about helping children with autism were totally inaccurate. I think a lot of people share the same perception that I did—that early intervention is not just the best, but the only opportunity to help children with autism learn and grow. Now I know that is far from true.

A lot of people have this idea that there is some sort of invisible “window” of time when it is possible to help children with autism. After about age five or six the “window” closes, and any further therapy or other efforts are useless. I think we need to take this idea of a “window” and throw it out the window. Early intervention is extremely important, but there is no age when a child shuts off and can no longer improve. I am now opening myself up to more experiences working with older children and teens on the spectrum, because I’ve realized that it is never too late to impact the lives of people with autism.

*I changed this name for the post.

Subtle Social Skills (Kate Altman, M.S.)

When treating children and even adults on the autism spectrum, one of the core areas of treatment comprises social skills training.  Many--if not most--children with ASDs spend at least some time in a social skills group or class (either in school or outside of school) and much of individual therapy focuses on social skills development and education as well.

What are social skills?  "Social skills" applies to such a broad array of behaviors, knowledge, language, rituals and graces that evolve with time, age, and culture.  Teaching social skills to young children often looks similar to a course on etiquette (say "please and thank you"; allow for personal space, etc.).  However, when children with ASDs become adolescents and adults, they must contend with and fit into a much more nuanced and complex social world.  Learning and using social skills can be much more challenging--and even more crucial to happy and healthy social functioning.  After all, an adorable 5 year-old can more easily get away with not following social norms than a 25 year-old who most probably expect "should know better".  

Social skills are not just about behaving a certain way in order to fit in to society, they are also about understanding and connecting with other people in order to make meaningful relationships.  In my research with young adults on the spectrum, I asked them a lot about how they learned to use good social skills to build relationships.  One important issue that came up repeatedly was the issue of trust in new friendships.  Trying to figure out how to know if you can trust another person is challenging, especially in a new relationship...and it is a social skill.  When I asked one young woman how she knows she can trust a new friend, she described using a simple rule she had figure out for herself: a good clue that indicates someone is probably trustworthy is if they confide some piece of important information in you first.  She described realizing she could trust a new friend in college when that friend called to tell her that her grandmother had passed away.  

I thought that the young woman's revelation was simple, yet brilliant, as good social skills rules and clues often are.  For a good book on the unwritten social rules, click here. And for information on social skills-based therapies in the Philadelphia area, contact Alternative Choices.